[Kazzam2Participant]

Hi Jean,
thanks for replying. I was diagnosed with MM at this hospital by BMT, and I am sure it was only a day or 2. I'm going with no news/good news.

Regards, and best wishes to Frank and yourself x
Karen

[Kazzam2Participant]

Hi All,
Just an update. I have been for my 4 weekly Zometta. My consultant has not replied to my latest (yesterday)email/query about my test reults, I am thinking she may be on holiday. I thought I would chance asking the nurse who was sorting my Zometta infusion, as they have my records on the ward. She just asked when is my next clinic appointment, when I said end of August, she said oh I imagine they will be ready for then. 🙁

I am off to the garden to dig a very big hole to bury my head in!

Enjoy the sunshine everyone8-)

Thanks for your best wishes Tony and regards to your wife (Ellen? sorry my memory is shocking) xx

[Kazzam2Participant]

Thanks Eve,

I am locking MM in a cupboard next week and going away for a few days! 😀
First time away since this dreaded roller coaster started, (not counting my stay overs in Leicester!)

Hi TonyF, I was sent for bone marrow test because a MRI I had in mid May is showing up active disease on my spine, despite my blood tests suggesting complete remission, so it is to be on the safe side. As for emailing Dr Garg, I did once, cannot remember what for now, but something I felt would not wait till Clinic, her email address is on hospital letters (the copy they send to your GP), she answered straight away (beats phoning 😀 ), and now she if she is rushed in clinic she tells me to email her! A couple of times she has emailed me out of blue asking after me. I do not imagine this is the norm, so have changed her name (ha), I do try not to over use it tho, so sshh x

Hi Ali,

Thanks for that, it is a long wait, I think, the nurse that did test did ask when my next appointment is, and said nothing when I said end of August. Thanks for your best wishes, hope your mum gets on okay.
Thank you all, will keep you posted
Love
Karen
xxx

[Kazzam2Participant]

Hi Eve

Thanks for taking the time to reply. My SCT was 6 months today, just for the record 🙂

My next appointment to see my consultant is 29th August!!! I go every 4 weeks for zometta infusion, but that is all.

Thanks, and best wishes to Slim
Love
Karen
xx

[Kazzam2Participant]

Hi Tom,

just would like to send my best wishes, reading your account took me back to January!:-)
All the very best
Karen
xx

[Kazzam2Participant]

I also shared on Facebook and twitter

Karen
xx

[Kazzam2Participant]

Hi tom,

Not been on for a while. This is great news, hope all goes well for you.

Best wishes 🙂 Love Karen
xx

[Kazzam2Participant]

Hi all,
Quick update

I have an appointment for next Thursday (27th June), for radiotherapy!

Things seem to be moving quickly, so top marks to my consultant for her fast acting 🙂

I may as well move into LRI tho, i seem to be there more than ever lately :-S

Warm wishes
Karen
xx

[Kazzam2Participant]

Hi Sue,

This is great news!!:-D And very encouraging.

Warm wishes
Karen
xx

[Kazzam2Participant]

Hi All, Thanks TonyF and Eve for your thought and best wishes.
well I had my infusion and then went down to clinic, my consultant had pre warned the desk staff to send me straight in! (no appoinntment.)

Anyway, she really only said the bone marrow test is to be on the safe side, that the recent MRI could just mean it gets worse before it gets better, when myeloma is got rid of it leaves gaps in the bone marrow, this sounds odd, but she told me not to worry (yeah right). I will have another MRI in 3 months. Oh an the vertobplasty I had last October has collapsed, so I may need another one, why bother if it has failed. that does explain why my pain is getting worse.

Eve, you said to listen to my body. I am and I know something is not right, i worry that the morphine is masking something, the pain is bad enough on it.

Oh well, bone marrow test on 2nd July, so we will see.

Thanks for your best wishes.
warm wishes
Karen
xx

[Kazzam2Participant]

Hi All, Thanks TonyF and Eve for your thought and best wishes.
well I had my infusion and then went down to clinic, my consultant had pre warned the desk staff to send me straight in! (no appoinntment.)

Anyway, she really only said the bone marrow test is to be on the safe side, that the recent MRI could just mean it gets worse before it gets better, when myeloma is got rid of it leaves gaps in the bone marrow, this sounds odd, but she told me not to worry (yeah right). I will have another MRI in 3 months. Oh an the vertobplasty I had last October has collapsed, so I may need another one, why bother if it has failed. that does explain why my pain is getting worse.

Eve, you said to listen to my body. I am and I know something is not right, i worry that the morphine is masking something, the pain is bad enough on it.

Oh well, bone marrow test on 2nd July, so we will see.

Thanks for your best wishes.
warm wishes
Karen
xx

[Kazzam2Participant]

Hi david,

Thanks x I do not know if to laugh or cry as re reading it, it says appears to be in completes remission.:-S

My consultant has just emailed telling me to call in to talk to her after my infusion today. Scarey stuff!

Update later
Warm wishes
Karen
xx

[Kazzam2Participant]

Hi All, thanks for all your best wihshes, but there seems to be a bit of a twist!! 🙁
I received the following yesterday at 4.32 pm from my consultant I am copying and pasting :

Dear Karen

We discussed you at our MDT today as I had promised
Your disease appears to be in complete remission but MR scan report suggest as if there is still some active disease!!
To be on the safer side we have decided to book a bone marrow test with cytogenetics for you.
Please confirm that you have booked your vaccination 1st lot with your GP.
I have checked that we have enough stem cells left for a second transplant if we ever need to. No plans as yet.
I have referred you for radiotherapy to thoracic spine mainly for pain relief (single session) Form given to MDT cood.

Well that was short lived,:-S I have asked does this mean the SCT has failed as it was only 5 months ago, I am awaiting reply. I am going to hospital today but just for my Zometta.

Now I know what people mean when they say it is a roller coaster ride!

Warm wishes to all
Karen xx

[Kazzam2Participant]

Hi Babs,

Welcome to you too, I'm sure we will bump into each other on here!:-)
Very warm wishes
Karen

[Kazzam2Participant]

Hi Posie,

Welcome to yourself and David. I am fairly new to the forum, they are a very friendly crowd. I have certainly felt better about my MM since discovering this site and realising that although it is rare, a lot of people are in the same or similar situations, and through sharing stories and experiences it helps us all cope, and they are a cheerful lot despite everything.

Nice to meet you and I'm sure we will bump into each other from time to time
🙂
Very warm wishes
Karen

[Author]

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